The mental health and mortality impact of death of a partner with dementia

Abstract

Objective Caring for a partner with dementia and partner bereavement are independently associated with poor health. An understanding of the health effects of living with a partner dying with dementia can help optimise support. We describe health in the year before and after loss of a partner with dementia compared with other bereavements. Methods In a UK primary care database, 2624 older individuals whose partner died with dementia during 2005–2012 were matched with 7512 individuals experiencing bereavement where the deceased partner had no dementia recorded. Results Prior to bereavement, partners of the deceased with dementia were more likely to be diagnosed with depression (OR 2.31, 1.69–3.14) and receive psychotropic medication (OR 1.34, 1.21–1.49) than partners from bereavements without dementia. In contrast, psychotropic medication initiation two months after dementia bereavement was lower (HR 0.69, 0.56–0.85). Compared with other bereaved individuals, mortality after bereavement was lower in men experiencing a dementia bereavement (HR 0.68, 0.49–0.94) but similar in women (HR 1.02, 0.75–1.38). Prior to bereavement, those who died with dementia were less likely to receive palliative care (OR 0.47, 0.41–0.54). Conclusion In the year before bereavement, partners of individuals dying with dementia experience poorer mental health than those facing bereavement from other causes, and their partner is less likely to receive palliative care. In the year after, individuals whose partner died with dementia experience some attenuation of the adverse health effects of bereavement. Services need to address the needs of carers for individuals dying with dementia and improve access to palliative care. Copyright © 2016 John Wiley & Sons, Ltd.

Bereaved family members’ perceptions of the quality of end-of-life care across four types of inpatient care settings

“…Negative perceptions about care quality can also influence how family members adjust to the loss of the person close to them [ 23 , 24 ]. Research has shown that family members’ dissatisfaction with the quality of EOL care is associated with negative psychological outcomes such as prolonged and pathologic grief, depression and decreased quality of life, and, in turn, can contribute to an increase in the utilization of health care resources by bereaved family members [ 14 , 25 – 28 ]. Some research has suggested that grief following the loss of a significant other, and both patient and family member demographic characteristics [ 29 , 30 ], may play a role in influencing how individuals appraise certain events in their life but studies examining these characteristics in relation to how bereaved family members perceive care quality are sparse [ 31 ].…”

Caring for a family member or friend with dementia at the end of life: A scoping review and implications for palliative care practice

“…21,25,27,33 Targeted support interventions for carers reduced long-term depressive symptoms and mitigated negative health effects, both before and after care recipient death. 19,30,32,34,35 Practical support from professionals relieved some of the burden of caring, which also alleviated carers' guilt and role strain. 25,29,31 Carers widely expressed a desire for health care professionals to provide them with information -particularly regarding the progression of dementia.…”

“…Caring for a person with dementia is a unique experience, with specific characteristics of dementia influencing the carer providing end-of-life care. 19 For example, the gradual loss of communication abilities was particularly stressful for carers. 7 Considering the pre-death experiences of grief and communication loss that are common in dementia care, it has been suggested that a palliative approach could appropriately enable people with dementia, their family and carers and health care professionals to negotiate the end-of-life period.…”

“…33 However, dementia patients were less likely to receive palliative care than those approaching death due to other terminal illnesses. 19 Carers reported the palliative phase as being a difficult time for them personally, as they questioned themselves about withholding treatments and the ethical aspects of end-of-life care for those unable to make decision about their own treatment. 22,23 Advance planning offers a range of potential benefits to people with dementia and their carers by initiating conversations that encourage thinking ahead and articulating care preferences for the future.…”

Carers’ Experiences of End‐of‐Life Care: A Scoping Review and Application of Personal Construct Psychology

“…Literature widely indicates that caring has a significant effect on carers, particularly in regards to their wellbeing and role strain (e.g., Adelman, Tmanova, Delgado, Dion, & Lachs, ; Cummins et al, ; de Oliveira et al, ). These effects can be exacerbated in situations of end‐of‐life care, as care recipients’ support needs increase (Ando, Ninosaka, Okamura, & Ishi, ; Shah et al, ). Importantly, caring roles do not cease at the time of death, with carers often needing to arrange funerals, estate disposals, and so on (Bern‐Klug, ).…”